Monday, March 19, 2007

I am relived to announce that the psychologist we have been seeing since moving to this city is a normal, sensible human-being (as distinct from a teacher, for example). We had a talk today about our guy's unaccountably low score on his latest IQ test (down a full standard deviation from his previous one) and he suggested that we retest.

It's not that I am hung up on IQ, but we want to have numbers for the school that reflect what he can do. Schools tend to extract work out of kids that meets what they perceive to be their potential. If the school found out that our guy was producing work that exceeded his potential as measured by an IQ test, they would be sure to offer him less difficult things to do, so as to match that potential.

The other thing is that, if his conventionally measured IQ really were as low as the last measurement (borderline MR) then we would have to find out what processing facility he relies on for the competences he has. I'm talking about things like finding and installing DDR (Dance Dance Revolution) editing software and using it to make custom DDR tracks for his favorite songs, or finding the locations of all the DDR machines within a 20 mile radius so that he go visit the ones with the best songs. If I managed to that, I'd be feeling fairly proud of myself. If an 11-year-old is doing it without any help from grownups, there must be some cognitive capacity that he is using to do it. If it turns out that is is not the sort of cognitive capacity that can be measured by an IQ test then, we better find out what it is based on so that we can strengthen whatever it is.

Sunday, March 18, 2007

I often wonder how it is that our guy looses words. He talks about the "toast making machine" for "toaster" and even "the car driving place" for "road." Today his band-new SLP pointed to a picture and asked what it was. "A cloth" he said. "And do you see one of those in my office?" "Yes. There." "And what is it called." "A window cloth. ... A curtain." It makes me wonder. It's a word we use at home all the time, as it's his job to open and close the curtains. The SLP's first question was astute, because it showed her whether he knew the concept of curtain. By identifying another object it the same class, he showed that he did. His second answer, "window cloth" also shows that he knows what defines it. His third answer of "curtain" shows that the word was in fact stored in memory. But for some reason it was unaccessible for production as speech (it have no idea whether or not it would have been accessible if the conversation had been happening in text).

We ended up not choosing the SLP who was into Michelle Garcia Winner, but that was not because of my opinion of MGW's attitude. The thing that made us want to work with the second SLP that we interviewed was her use of the techniques of Naci Bell and Reuven Feuerstein, neither of whom I had heard of before. They both start from the idea that processing can be made more flexible and successful by a combination of cognitive training and learned meta-cognitive habits. It's an interesting idea. I have no idea whether it will work for our guy, but the literature shows that it does sometimes appear to work, which is about the highest acclaim that can be given to any form of therapy for communicative speech to date. It certainly can't be much less effective than all the speech therapy he has had in the past.

The new SLP's idea is to teach him to use his visual processing for language processing tasks. If I understand her correctly, her tests showed that our guy has more visual processing capacity than auditory processing capacity (no big surprise there), so she will attempt to rewire his brain to use some of that left-over visual processing capacity to supplement auditory processing tasks. It's ambitious, but there is plenty of evidence that the brain is quite happy to remap resources -- consider the gains in one sense when another sense is lost. It will be months before we have any inkling as to whether it is useful, but the guy enjoyed today's session and it feels good to be doing something .

Saturday, March 17, 2007

Last night we decided to get a movie, and the guy decided on Talladega Nights. The movie is OK if you like your comedy embarrassingly stupid and crude, but it did not go over well with our guy. The first problem was the kids in the movie swearing. Our guy knows that kids are not allowed to swear and it upsets him greatly to see it. He had a similar reaction watching bits of The Squid and The Whale. It brought him to tears to see it, but when we suggested turning it off and reading a book instead, he insisted we keep going. Next there were people shouting and being mean to each other for no particular reason -- another near melt down, another offer to stop, and another insistence that we keep going. Then came the scene where Will Ferrell believes he is on fire but, as our guy loudly pointed out, "He is not on fire!" Shortly after this I has the audacity to laugh at something, and that was the straw that broke the camel's back. A major crying jag ensured and the grownups insisted that the movie was over, because there no point watching something that makes you miserable. Our guy, had different ideas. "I need ten minutes to clam down," he told us. "Don't turn it off and don't watch it, just leave it paused. I'm coming back." And with that he went to his room.

We imagined that the "ten minutes" business was really just a graceful exit line, but at the appointed time he was back, fully composed -- smiling even -- and ready to watch the rest. Plot-wise, things get better and more closely approach social norms in second half of the movie, so there were not many more complaints from the peanut gallery and his final judgment was "pretty good."

My wife and I speculated about what was going on. This is the type of reaction that is usually reserved for injustice (either on the screen or in books). It occurred to us that he was upset by the fact that the film was absurd and things did not follow in an orderly manner. This morning, however, when I talked it over with him and tried to explain what "absurd" means, I found myself using as an example the YouTube Poop videos which he loves to both watch and create. These videos take absurdity to the extreme, but he loves it. So I guess it's just social rules, and not rules of narrative logic, that he cannot stand to see broken.

All in all, it was one of those wish-we-hadn't-but-glad-we-did events. On one had, it was stressful for everyone, but on the other hand, he recognized his level of disregulation for what it was and managed to turn it around with style. That was the first time he has ever told us that he needs time to clam down -- it's usually the other way around. My guess is that it was an opportunity to take a step forward.

Thursday, March 15, 2007

In a way, the way things have worked out with the school is kind of liberating. We now know to expect nothing useful from them, so we don't have concern ourselves with trying to bring about a useful outcome. I slept better than I had in a while last night and I woke up feeling motivated to get things done. We enrolled our guy in a two day video game design class, got all the information about a tutoring program (Sylvan) that he might like, rented a car so that we can take him around to these various places, got info on kids activities at the local community center and actually took our guy to a "Boys Night Out" at this same community center. Now that I see it written down, that really is a lot for one day.

The Boys Night Out worked really well. There are usually about 8 boys from nine to twelve years old there, but for some reason there was only one other kid. This one other kid was of the type who likes to stand still and list a lot of information about video games. They had a nice quiet time and exchanged phone numbers at the end. Our guy was pretty reluctant about the phone number thing, because the idea that he might have to have someone over was pretty intimidating, and he did make some complaints to me. Fortunately, his play mate didn't seem to notice his worries. I'm not going to push the play date thing, but one can always hope. Unfortunately, it will be another month until the next Boys Night Out.

This kid also turned out to go to a funky alternative school. I looked it up on the web and it does seem interesting. We hadn't been aware that there were alternative schools in this city. That's kind of refreshing too. I don't know that our guy would do best in an alternative school -- in fact, I could see the lack of structure being extremely difficult -- but just to be reminded that the closed minded folks around the corner are not the only version of education is somehow relaxing.

Wednesday, March 14, 2007

It's a disappointingly day for us. The vice-principle called to tell us what would be decided at our son's upcoming IEP meeting, and it does not include any of the goals that we think are important. At least she was forthright and did not lead us to believe that we would be consulted in a meaningful way.

After six months of back and forth, the school is more convinced than ever that our guy only got As and Bs at his previous school because of unreasonable pressure and bullying parenting (this is their explanation for his behavior, which includes quite a bit of crying and unusual facial expressions) and that it is in his best interest not to teach him grade level academics. It is straight-up discrimination based on neurological differences and we should probably be suing their posteriors, but I can't see that a law suit would make them change their minds. They would just be crappier to our guy.

We will try to minimize the damage by getting him some outside tutoring along with after school clubs and activities to try and offset the massive confidence drain that the school creates. We had hoped to bring about goals like learning and confidence building within the school, because it is actually taxing on the guy to have to do another whole round of learning outside the school. But ultimately, self doubt is more draining than any amount of work.

I wish I had my son's time machine so that I could set dial to the day on which we made the decision to move, and then play my former self today's conversation with the VP. If anyone who is reading this is thinking of moving with a child who has special needs, be sure your research is more through than ours. Don't be convinced by platitudes and protestations of modern thinking. Talk to local parents. See what they have to say. I have since done that and found that our case is not unusual. I wish I had done it earlier.

Tuesday, March 13, 2007

If you haven't read Zilari's blog (partprocessing.blogspot.com) you are missing out. Unfortunately, her blog has been paused, so all you can read is the archives, but the archives are great. Zilari explains what is going on with her in way that is easy to grasp and empathize with. In particular, her February entry gave me a new window into why we say the things we do.

I remember being asked what I'd done in school as a child, and literally not having any of the words to describe what happened, even if I could picture what had happened. When an answer was demanded, I would resort to "stock phrases" and memorized scripts, some of which I knew were not accurate.

...

I remember actually telling people, echolalically, "I am acting this way because I am bored, because I am too smart for this classroom material", or, "I cannot control my behavior because I was molested". My saying these things did not mean I actually thought them, or that they were true -- rather, they were simply the only words I had at the time. Not responding was not an option...when asked, "Why do you act this way?", the most truthful answer -- "I don't know" -- was never acceptable.

I began to see conversations of that sort as a kind of puzzle or a trap from which I had to escape; the communicative aspects of those conversations were lost on me completely. I knew that someone was putting words in front of me, and that until I gave back the right words in response, I would not be allowed to leave or exit the conversation.

You don't have to be on the spectrum to experience conversation in this way to some extent. According to tests, I'm as far off the spectrum as they get, and yet it's not uncommon for me to say things simply because I imagine that is what is expected of me, or because I cannot think of anything else to say. And this is not by any means a fully conscious process. We don't make decisions about everything we say. A good part of it just comes out. It is not even uncommon for people to "discover" that they believe a certain thing or feel a certain way only when the given sentiment pops inexplicably out of their mouth. Likewise people get caught up in the most complex lies simply in order to protect a minor untruth that appeared unplanned in the middle of a conversation.

It makes sense, then, that this problem could be far more common and more difficult to deal with if you have trouble with auditory processing and generating speech on demand. Our guy does this sort of thing all the time. He will say something that is completely untrue or even unrelated to the idea that he is trying to communicate. Sometimes it's obvious. The other day an SLP asked him if our cat slept with him and he replied 'yes' (untrue) and then further agreed that the cat was nice a warm and soft in bed (our guy has never so much as touched the cat, because he has no interest in it at all). But it would have been much harder to explain that than to agree with the SLP. Sometimes it is more complex and he will actually say something that he doesn't intend and then be frustrated when people act on what he said, rather than what he intended. At which point he will generally shout, "I just said it by accident! Everyone makes mistakes, you know!" And he's quite right.

I've always realized that, while frustrating for everyone involved, these slips of the tongue are not done on purpose and so are not, for me, a big deal. But in reading the rest of Zilari's blog entry, I can see how these might cause all kinds of grief in an ordinary social setting such as a school, where the interlocutor has no other information to go on and takes everything that is said at face value. And the annoying thing is that I cannot think of any strategy to avoid or lessen the problems that this could bring in school. If anyone has a strategy, I'd love to hear it.

Monday, March 12, 2007

The other day we went skiing and, in the car on the way back, after six and a half hours of green and blue runs, the guy was in a mood to talk. It's remarkable how moving his body seems to help with talking. My wife also points out that cars are a great place for conversation, as the passenger and the driver sit side-by-side with no eye contact, which takes the stress off.

The subject of the day was time machines, as it has been for about a week. I don't know why time travel popped into his consciousness, but it has been great, because the whole issue of the past and history has been been very murky for the guy up to now, but with the idea of being able to visit, everything is starting to make sense to him. On this day my guy wanted to go back to 1937, to see his grandfather being born. I suggested that 1937 would be a scary year to visit Europe, and this lead to going through the entire history of WWII. He "got" the everything with all the questions and outrage you would expect of anyone hearing the story for the first time.

I was really impressed because an hour of abstract discussion of history is not usually the sort of thing to hold his attention. So I decided to press my luck and make the conversation even more abstract. I told him, "I want you to consider a question that has no right answer. There are two ways to answer it, but people have been debating it for years, so no reply is completely right or wrong, it's just interesting to discuss." He was up for it, so I asked him "If you could use your time machine to go back to the 1930s and you found Hitler in a restaurant, would you kill him?"

The guy didn't even miss a beat. He said, "No. Killing is not a good idea." And then, before I had chance to complement him on his principled response, he went on to say, "But you could talk to him. You could tell him that all the people would died from the bombs, and make him not do it." I was amazed. I said there was no right answer, but he had come up with one. And then he added, "But he might not listen to you, because he was too busy taking over the world. So you should use the time machine to go to when he was a kid. Because kids are nice and if you tell him when he was a kid, he might listen to you. You could tell him, 'Listen, there are lots of other jobs out there besides taking over the world.'"

The conversation went on from there to the problems of getting recognition for changing history (no one in the present would know of the problem that had been adverted) and whether it was worth trying to change people's ways when so many do not listen (the guy thought it was).

You might, by this point, be wondering why this tale of a father's ordinary pride in son grappling and with and successfully navigating abstract questions is worthy of a blog post. To put this in context, a few days earlier the school SLP had announced that they guy was incapable of grasping the concept of "why." She had presented him with a picture of a mouse and some cheese, and a second picture of a fat mouse and no cheese. Apparently he had been unable to explain what had happened. She had interpreted this as meaning that cause and effect was beyond him. And the thing is, maybe it was in that context. Or maybe he just didn't care enough about mice and cheese to give any thought to the question. I don't know. All I know is that the guy who can devise improved, ethical methods for changing history is seen by his SLP as incapable of the most rudimentary abstract thought, and will continue to be treated as such in school.

-- As an addendum, at dinner tonight our guy complained about the SLP who had raised his ire by taking him out of class where they were correcting their spelling (apparently a fun activity) and made him do boring testing. When we asked whether he had told her the testing was boring he said, "No, I just stand still and try to pretend she doesn't exist." That could explain some of the results that she's getting.

Saturday, March 10, 2007

We visited an SLP on Friday who seemed bright and dedicated and had a good rapport with our guy. She told us that she was keen on the works of Michelle Garcia Winner, so I checked her out on the Web. There were some aspects of her work that I liked. I liked the fact that she took a direct instruction approach. I liked the fact that she uses graphics in teaching. But I did not like the impression I got that MGW perceives herself, and all other NT people, to be inherently superior to the people she is tasked with helping.

In describing an interaction with a bright young man, she recounts:

In an effort to help one of my clinician’s understand Joe’s limited perspective-taking abilities and how they impacted his social interactions I asked her to observe me interact with Joe. I then asked Joe to tell me everything he knew about chemistry. This delighted Joe and he enthusiastically began to tell me all about the topic. As he did so I initially responded with active listening, then slowly I got up out of my chair, walked out a door and stood on the other side of the door only to have Joe continue to look at my chair and talk about chemistry.

I cannot help but feel that this demonstrates a lack of respect for Joe. Would she be as quick to make an NT child look foolish in front of a colleague? Perhaps she would, but experience make me think it unlikely. There is no mention of how Joe felt, if and when he realized that a trick had been played on him, but it's hard to imagine that the experience would have been a big self-esteem booster.

MGW's articles give examples of people who perform well in a number of areas but, due to a "deficit" in the area MGW considers to be most important, come to nasty ends. There is, however, a conspicuous lack of stories about people with processing differences who overcome the hurdles that these present. MGW's world seems pretty bleak.

Truth be told, I'm not wild about therapists who use the term "deficit." As a kid, I was labeled dyslexic. As a result, I went through a lot of testing and had a lot of people give me the "poor thing" treatment. I guess I didn't suffer excessively at the hands of people who shook their heads in sad wonder over the boy who read slowly and couldn't spell, but it wasn't exactly and uplifting experience, either. Somehow, I muddled through and, when I got to university, where I was studying English Literature, I made the most curious discovery. It turns out I had far better recall of what I had read than almost anyone else in my seminars. I certainly didn't have anything like a photographic memory, but I could quote pretty well verbatim from anywhere in any book that I had read and, if I flicked though the book, I could always find the passage I had in mind in a matter of seconds. The other students, who presumably were not "dyslexic," couldn't do this nearly as well. (That made it easy to win debates, even though it probably also meant I was spending a few more hours than my peers reading each novel.) Later I learned to read and write in three more languages, including Japanese. In addition to translating between these languages, I now write and lecture on translation theory and, in particular, how we can be sure of what we are reading and writing. This is one reason why I think therapists would be better off using words like "difference," "difficulty" and "challenge" over "deficit." It's not just that the term may turn out to be inaccurate and limiting. My concern is that, if you tell a person, or their caregivers, that they have a deficit, they are much less likely to find out that their difference can be a strength.

Another problem with MGW is her focus on eye contact. I would have to see how it plays out, but it seems to me that trying to make better communicators out of spectrumy people while insisting on eye contact is akin to trying to make a better swimmer out of someone with an anvil tied around their neck. My guy communicates much better if he is not sitting face to face with his interlocutor. I am, however, willing to be open mined on this. MGW may not have adopted this goal simply as a matter of aesthetics, nor on the assumption that all aspects of NT conversational style are worthy of imitation simply on the grounds of their usage -- the way some old ladies select marmalade only because the label states that it is eaten by the Queen.

In the overall, I am inclined to override my gut reaction and see how her approach actually works. That might seem odd, but my reason ties back once again to my own experiences as a dyslexic. You see, with all that tut-tutting and hand-wringing, and all the classes I took in which I bounced on trampolines and drew pictures of things reflected in mirrors, nobody actually tried teaching me to spell. There was no discussion of rules, no memory drilling, no goals set and no useful measure of progress. As a result, as you have probably already noticed by way of a homophone in this blog that the spell checker did not catch, I am not much better in terms of that skill that I was at school. If I could turn the clock back and direct my own education, I would recommend less trampolines and more i-before-e-except-after-c; so perhaps a little try-to-think-about-what-they-are-thinking would be good for my progeny.

Thursday, March 8, 2007

I just got the results from our guy's statewide tests for last year and he got 3s (Bs) in English, Science and Math. Meanwhile, his last psych-ed evaluation showed him to be performing at grade level (grade 5) in all academic areas, but at the same time to be slightly mentally retarded.

I've been doing some web research on metal retardation and autism, and there does not seem to be a single example of a child being autistic, having a significant language delay, performing at above average levels in academic tasks and having an IQ lower of 70. The psychologist who did the evaluation, and who had seen our guy's last report card which was all As and Bs, seemed to think that the number the evaluation gave could be right and said that perhaps he had just been going to a particularly good school. For those numbers to work out, it would have to be one damned fine school.

Perhaps I am missing something. I know that our guy is sometimes slow on the uptake and has some odd ideas about how the world works. But on the other hand, at 11 years old he can edit sophisticated videos with multiple tracks, for which he has a following on YouTube. He participates in web forums and is has even been made a moderator on one. He can cook full meals, do his own laundry, run errands and lots of other things that not all 11 year olds can do.

It just doesn't fit with mental retardation, in fact, it doesn't come close to fitting.

Wednesday, March 7, 2007

Reading what other bloggers have to say, I notice a theme (here and here, for example) to the effect that the extremely negative view of autistic lives found on in some places, such as Cure Autism Now, is out of place.

By way of full disclosure, I'm in the neuro-diversity camp. The way I see it, no matter how our brains are wired, it's pretty odd to find our selves on this planet processing information and interacting with the environment. We are all, at the fundamental level, in the same boat. And to say that one way of processing and interacting is better than another would be like saying that it is better to be born a cat than a dog. So, that's my bias.

I also believe, however, that happiness is better than suffering, and that, for all conscious beings, happiness and suffering are a function of how we interact with our environment. From a biological perspective, that is why they exist -- in order to flexibly shape our interaction with the environment.

If we are unhappy, we can change the environment or we can change ourselves. I think that people who have an accepting view of autism have this view because we see ways in which we can change the environment (support, accommodations, technology, awareness) enough to make our children happy. We also see potential for changing our children (education, development) so that they can be happy even in unmodified, or minimally modified, environments. My guess is that parents who are less accepting of autism, may feel that way because they do not see any way to change the environment or change their children enough for them to be happy. If autism was making it impossible for my son to be happy, you can bet I would be much less accepting of it.

Of course, as soon as I start down this path, I run the risk of being seen as reducing it all to distinctions between high-functioning vs. low-functioning. But that is not my intention. What I am actually talking about is happy vs. unhappy. A person can be very "high-functioning" and still unhappy. The opposite is also true.

I'm not sure what the incidence of unhappiness in the autistic population is compared with the general population. What is more, if it is higher than that of the general population -- and I suspect it is -- I'm not sure how successful we can be in reducing it to normal levels. It is the answers to these questions that I think should determine the extent to which we view autism in the overall, and not just the autism that affects us personally, in a negative or accepting light.

Tuesday, March 6, 2007

A series of things have occurred that stress me to the point where I am thinking about nothing else but the young guy, his school and his support people. This is new. I've generally be comfortable with my the young guy, his school and -- when present -- his support people. What makes this more odd is that the young guy has, in my opinion, been doing remarkably well, and making all sorts of developmental leaps and bounds.

What has changed is where we live. Last summer we moved from a very big city to a medium sized one. In the very big city, the young guy was seen as having a social learning disability, needing minimal support. He was most recently diagnosed with a moderate speech delay and mandated small group social skills and speech therapy, for about two to three hours of pull-out time per week. In the medium sized city they suggested that we pursue an autism diagnosis, which we got. But at the same time, the psychologist pegged the young guy's IQ at borderline retarded, while the big city psychologist had clocked it at normal. What is more, the medium sized city SLP upgraded the young guy's language delay to severe. In the big city, the young guy did well in school. He got As and Bs. Last year, he got Bs in both the both Math and English statewide standardized tests that they subject the kids to in grade four. Here, they refuse to even give him grades for anything but math. Which is another way of saying they are giving him straight Fs in everything but math. What is more, they young guy had plenty of friends in the big city, including friends in class, friends from his block and friends of the family. In the medium sized city, he has shown reluctance to even attempt to meet or hang out with any of his peers.

So in a few months, the young guy has gone from being, in everyone's estimation, a kid with a few challenges, who is doing very well, to a kid who is seen by everyone, except for me and his mother, as having a host of severe problems and limitations.

I am aware that much of this might have to do with the transition itself. All kids find moves hard. Spectrumy kids are bound to find it harder. And it's not like the young guy is responding by being angry or defiant. He just cries, or grimaces, or hides his face, or says "I'm sorry, I'm sorry, I'm sorry!" (Behavior that, up to now, has been seen as part of the young guy's personality, but which is now viewed as a major problem by his teachers.) But knowing that it could be worse is a bit like telling yourself that it's not so bad to have the flu, because at least you don't have cancer. It's not an inherently comforting line of reasoning.

In fact, the really upsetting thing for me is the cognitive dissonance between how well I see the guy doing and how he is being evaluated by those around him. I guess I feel that, if they don't like how he's doing now, they will never like how he does in the future.

Another half of my concern is that the guy we are seeing and the guy other people are seeing may not be the same guy. It is possible that, at home, where things are pretty much the same as they were in the big city, we see a guy who is pretty much the same as he was in the big city. While at school and in psychologists' offices, they see a guy who finds himself in an alien environment and is trying to regulate the situation in any way he can, which may include not actually engaging or giving real consideration to questions that are being asked.

In the past, the guy has been very good at regulating situations. Teacher's and interveners often told us that he wrapped them around his finger. He's a really nice sweet guy, so it's easy for him to do that. I don't hear that anymore. All I hear are lists of things that he cannot do or does not understand. I'm told that he giggles and acts silly when asked skill-testing questions. I wonder if that is a way of regulating the situation.

Whatever the reasons, I don't like what it happening. I don't like it one bit.

"While I was sitting one night with a poet friend watching a great opera performed in a tent under arc lights, the poet took my arm and pointed silently. Far up, blundering out of the night, a huge Cecropia moth swept past from light to light over the posturings of the actors. “He doesn’t know,” my friend whispered excitedly. “He’s passing through an alien universe brightly lit but invisible to him. He’s in another play; he doesn’t see us. He doesn’t know. Maybe it’s happening right now to us.”